Tag Archives: autism therapies

Over the weekend I witnessed a young man who did not easily speak and when he did say a word, it was clear how hard he was having to work for that one syllable. Yet the people around him bombarded him with questions. Questions he could not answer with spoken language, but that did not stop them from asking. When he managed to make a sound resembling the answer they wanted, they would pause for a moment before asking him another question. After about ten minutes of this he retreated into what looked like a sensory friendly room, where he rocked gently back and forth, holding his hands over his ears. Even so, the questions continued.

Another boy who was having his lunch was told during a ten minute time period to “look at me” more than a dozen times. He too could not easily speak and was asked a great many questions. Things like, “Is that good?” When he said, what sounded like, “Yes,” the other person said, “Look at me. Stop. Put down your fork. Look at me. Is it very good?” When he again said, “Yes,” he was allowed to eat his lunch for a few seconds in peace before the next question came.

People often ask me why I object to ABA therapy. It is not only ABA therapy that I object to. It is ANY therapy that treats another human being as these very well-intentioned people were treating these young people, all of whom were teenagers. I object to the way so many, who are in the field of autism are trained and how that training affects how they speak to and interact with people who are autistic. I do not, for a moment, doubt that they believed that what they were doing was good and ultimately helpful to the kids they were working with. Yet each one of them was unconsciously or not, treating those kids as though they could not and did not understand what was being said to and about them. The kids were not being treated as one would treat their same age non autistic peers.

On the Presume Competence – What Does That Mean Exactly – post I wrote, “What I have come to understand, is that a presumption of competence is much more than a set of beliefs, it is a way of interacting with another human being who is seen as a true equal and as having the same basic human rights as I have.”

What I saw was fairly typical of what I see often – well-meaning people who are working with autistic people, but who do NOT presume them competent, not really. Had I said something to any of these people, I’m sure they would have expressed surprise with my observations of what they were doing and how they were interacting. I would even guess that they would have told me that they were presuming them competent. These were not mean people, they were not sadistic people, these were people who believed in the training they’ve been given and believed this was the best way to interact with these teenagers.

At one point the young man who was trying to eat his lunch, looked over at me and my son. My son, smiled at him and I did a little wave and said, “hi.” He nodded his head ever so slightly at us and then the person who was paid to sit with him, asked him another question. I do not doubt for a second that all the kids there were competent. In fact I am convinced of it. I know it to the core of my being as I have been around so many people who cannot speak, or who can speak, but not easily or naturally and who are all competent. But this was not how they were being treated. This idea, which is popular with a number of therapies, not just ABA, that we withhold desirable things until the person speaks as demanded, is not something I agree with because it is based in a presumption that wanting something is equated with ability and this is incorrect, even if it obtains the desired result – a verbal utterance.

Until Emma began to write, using her letter board, I had a great many thoughts about her that have proven incorrect. Until she began to express herself through those words she painstakingly spells out, I was not treating her as the exceedingly competent human being that she is, even though I often thought I was. Even now, on any given day, I do not do this as well as I’d like to. All those years of ingrained thinking are extremely difficult to change. But change I must…

What We Would Have Done Differently Had We Known What We Know Now is the longer version of the above title for this post.

Someone left a comment on a post I wrote about a year and a half ago – Want to Know About Autism? Ask An Autistic. In the comment they asked a number of questions and because they are questions others have also asked, I’m writing a post devoted solely to answering them.

“What would you have done with Emma if you had not fought your seven year war? How would you have spent that time with her knowing what you know now? What do you think would have been of most benefit to Emma when she was still too young to type? How would you have gone about learning assuming competence?”

“What would you have done with Emma if you had not fought your seven year war?”

The “seven-year war” they are referring to is one I describe in that post detailing all the things I did upon receiving my daughter’s diagnosis. To contemplate what we would have done differently had we known what we know now is both exhilarating and painful, but I’m going to give it my best shot…

The short answer is – we would have done everything differently. The longer answer is vast, so vast I don’t know that I can do it justice in just a few paragraphs, but I will try…

Once we were given her diagnosis I would not have done any of the therapies suggested other than occupational therapy. I know this will strike many as radical, even negligent, but I am speaking very specifically about my daughter. Right from the beginning, knowing what I know now, would have changed all of my thinking, reactions and response to my daughter. All those years spent trying to “help” her were years marked by fear, distress and worry.

I know now how sensitive Emma is to other people’s emotions, how she picks up on all of that easily and how distressing it can be for her. So there are things I would have done that actually have nothing to do with Emma, but that would have helped me be a better parent to her. Reducing my fear and constant worry would have been helpful to all of us. In order to do that I would have had to ignore pretty much everything I was being told about autism and what that meant for my child. The information we were given in 2004, the year Emma was diagnosed, was presented as fact. And, as it turns out, it was incorrect. I cannot think of a single thing we were told that did not prove later to be wrong. Think about that for a second… Every single thing we were told was incorrect. Everything. (Richard, correct me if I’m mistaken about this.)

A quick aside – this is where, the way our society is structured has done none of us any favors. If we lived in a truly inclusive society where autism was not denigrated, but was considered just another neurology, no better or worse than non-autistic neurology, where there was no judgement placed on either neurology, but more was treated as fact, where everyone came into contact with both neurologies on any given day in a variety of settings, “autism” would not be viewed with the fear and worry and even terror that it currently is. When I say “inclusive” I am using that word literally and not code for “tolerating” or “understanding” or even “accepting.” I mean a society where all neurologies are treated equal, without comparison of one, which is thought to be superior, to another considered inferior. An inclusive society would mean “accommodations” would be embedded into our daily lives seamlessly and without fanfare, just as the many accommodations non-autistic people enjoy without even noticing them, do.

I would not have sought out the advice of the slew of doctors and specialists we carted her off to. I would have surrounded her with music, singing, dancing, lots and lots of movement, gymnastics, swimming, trampolines, trapeze, art, literature, poetry (much of this we actually did do.) Had Soma begun her center at the time of Emma’s diagnosis, I would have begun learning RPM and implemented Soma‘s suggestions for very young children right away. Beginning with isolating the index finger to point independently and moving on to presenting written choices, for everything and anything – “do you want some M-I-L-K or do you prefer J-U-I-C-E?” Writing each letter, while saying the letters out loud as I did so. Encouraging her to point to the two choices I wrote.

There were many things, looking back, that we did right, things we did for both our children, such as getting her on skis when she was just three years old, horseback riding, lots of hiking, carrying her in a back pack, Emma loved being carried in a Kelty pack so she was able to view the world at the same height as me. We took the children to the theatre, puppet shows, kids concerts, and traveled on airplanes when they were both babies. I began brushing their teeth the minute that first tooth came in, I cannot tell you how grateful I am that I did that. I began flossing their teeth the instant a neighboring tooth appeared. I read to the children and provided both of them with lots and lots of books. We exposed our children to art and literature; these are all things I would not have changed.

“How would you have gone about learning assuming competence?”

Presuming competence is ongoing. It’s a practice, a mind set and it requires a leap of faith. Or at least this is how I have come to view it. Presuming competence is less about an idea and more about doing. It’s an action, one I must be constantly mindful of and vigilant about doing moment to moment. My past thinking is so ingrained, changing that thinking is something I must work hard at all the time. First I must become aware that I have ingrained thinking that is not presuming in my child’s competence, second, I must accept that my ingrained thinking is unhelpful and hurts my child, and third slowly, slowly work to do, and think about, things differently.

I’ve written about presuming competence ‘here‘, ‘here‘, ‘here‘ and ‘here,’ but I will just add that this is very much something I continually struggle to do better. To peel back the layers and layers of misinformation and assumptions that get in the way of being completely present in a way that is nonjudgmental and most helpful to my daughter so that she can flourish is not easy, but it is the single best thing I have strived to do. It requires actively ignoring the more common thinking about autism and what that neurology means. It means actively questioning everything I am told by people who present themselves as experts. It means listening, really listening to my daughter. It means sitting with the discomfort that I have done so much of this wrong. It means forgiving myself for my mistakes. This is the path I find myself on at present.

And truthfully it is Emma who is leading the way, my job is to follow, listen, learn and cheer her on.

The quest for various potions and remedies kept the mother separate from her child, though she did not know this at the time. The mother believed it a valiant quest, and prided herself in her vigilance and determination. She would single-handedly conquer what had thus far proven unconquerable to vast numbers of scientists, neurologists, neuropharmacologists, researchers and all those who had devoted their lives to finding a cure for autism. She would save her daughter and she would prevail. Call it arrogance, a lack of humility or simply being unable to understand; she would reflect on her own near miss with death as justification for her belief in her ability to do what no one else to date had. (And yes, she began to forget that her sobriety and abstinence were not due to will power or because she tried harder, but was because of the help she received from a larger group/ a power greater than herself.) All thoughts of something being more powerful than herself were temporarily forgotten, or put on hold, or, depending on the day, justified as being part of what she was trying to do. As I said before, she was veering from the path laid out for her by thousands of addicts who had years of sobriety and abstinence and practiced humility, honesty, openness, willingness and acceptance as the basic tenets of their ability to stay clean one day at a time.

“Courage to change the things I can…” she would often repeat this to herself during particularly tough times, neither saying the first part, “Grant me the serenity to accept the things I cannot change,” nor the last, “and wisdom to know the difference.” She believed herself to be courageous. She knew herself to be courageous. And she had learned over the years how to tap into her innate kindness, to foster it, encourage it and nurture it, though in her quest for a cure she felt increasingly out of touch with all that and began to struggle mightily with what it meant to take “the next right action” or know what it meant to know any will other than her own.

Whether there is a G-O-D piece to all this is not something I can speak of, nor can she, as this is a word that never brought solace, so in the midst of all of this she abandoned even saying the word and stopped trying to make sense of what it may or may not mean. She did, however, believe in something larger than herself, a power whose meaning shifted over the years and eventually evolved to mean – kindness, love, appreciation, gratitude – these were the things she knew to do and act upon when feelings began to feel factual, when feelings served to confuse her and make her believe them, despite what was happening and what she was witnessing. Acts of kindness were the mainstay of her “practice” for no other reason than she knew her life was better when practicing kindness than when she did not.

So it was not a leap for her to believe that finding a cure for all that ailed her daughter was an act of kindness. It’s important that I interject here that to this girl who had grown into a woman, had spent more than two decades of her life being an addict, found abstinence and sobriety through another way of being in this world, became a mother to two beautiful children, a “cure” meant removing all those things that caused her daughter pain. A cure meant that her daughter would be able to carry on a conversation, the way non-autistic children do, that she would not have GI issues, she would not have sensitivities to texture and noise and pain, but that she would be relieved of all of that. She told herself these were all things her daughter would want to have removed and be “cured” of if only she could tell her. The mother believed this wholeheartedly and comforted herself that she was doing the right thing. The only thing. The best thing. Not for a moment did she think of a “cure” as an eradication of her child, but more a version of her child. A kind of fantasy, similar to believing in Santa Claus, of who her child would be if she were relieved of all or most of her physical pain and had the ability to get along in society and this world with ease.

“We all have shame. We all have good and bad, dark and light, inside of us. But if we don’t come to terms with our shame, our struggles, we start believing that there’s something wrong with us – that we’re bad, flawed, not good enough – and even worse, we start acting on those beliefs. If we want to be fully engaged, to be connected, we have to be vulnerable. In order to be vulnerable, we need to develop resilience to shame.” ~ Daring Greatly by Brené Brown

I’ve written about shame before. A couple of commenters on my last post about shame told me to watch Brené Brown’s TED talks on vulnerability and shame, which I did. B. Brown also has several books, Daring Greatly, is the one I’m currently reading, where she writes, “A sense of worthiness inspires us to be vulnerable, share openly, and persevere. Shame keeps us small, resentful, and afraid.”

Shame is something I am intimate with. I don’t know many addicts who aren’t. I’ve written about addiction and specifically having an eating disorder ‘here‘, ‘here‘ and ‘here‘. The self-betrayal implicit in addictive behavior exacerbates the pre-existing shame, creating depression and self-loathing. Attempts to alleviate those feelings with addictive behavior only fuels them. Shame heaped upon more shame is not a recipe for happiness or success. Ignoring shame, trying to bury it, and trying harder to not feel it, doesn’t work either.

There have been a number of studies suggesting a link between addictive behavior and autism. I don’t find this surprising given how feelings of alienation, isolation and fractured self-worth all contribute to wanting to seek refuge and escape. Except the thing we are trying to escape from is often ourselves. Many of us have internalized our shame, particularly those of us who tend toward perfectionism. Add to this obsessive tendencies, a desire to be loved, wanting to fit in, believing we are “less than” and addiction can feel like a perfect fit and the only way we can survive in a hostile, unaccepting world.

Oddly, we, as a society, tend to attribute laziness and a lack of will power as the reason people eat too much, drink too much or spend more money than they make. Similarly, people seem to think autism is a choice or at least the behaviors associated with autism are. These people apparently believe Autistic people can “lose” their “autism” if they can just be trained to hide their “problem” behaviors or the things they do that make them obviously Autistic. Many Autistic people talk about being scolded and punished when they were unable to produce the results expected of them when told they needed to “try harder.” Trying harder will usually make the person feel more terrible about themselves.

I worry about a culture that is conditioned to believe we must ‘train’ our Autistic children to behave in ways that most cannot, or cannot without a massive cost to their self-esteem. I worry about “autism treatments” and “therapies” whose underlying message is that our children are not okay. I worry about what our children are internalizing. I worry about addiction, depression, suicidal ideation, and how those things get set in motion at a very young age from feeling we are “bad,” not worthy and less than. I worry that because many do not understand autism is a neurological wiring, or do not take into account the experience so many Autistic people are describing, we are raising fearful children, filled with shame for who they are as human beings. Instead of helping our children flourish, encouraging them to be all they can be, we are trying to make them into something they cannot be.

I love this photo of Emma because it captures her in all her Emma-ness!

There’s a blog I love, written by E. called The Third Glance. I found it last winter. Written by a PHD student, E. describes her life, her passions, her studies, while detailing her thought process while socializing with friends during an afternoon at a café or memories of growing up with abusive parents who didn’t understand her. E.’s compassion for humans and their neurological differences is striking as one considers the stigma she experienced growing up Autistic. The Third Glance was one of the first blogs I found in my search for Autistic Adults. E’s compassion and kindness shines through all her posts no matter the subject. Her determination to give people the benefit of the doubt was something I was astonished by, particularly during those first few months of my discovering Autistic blogs and reading that so much of what I’d done was not as altruistic as I’d believed.

When Em was diagnosed, the words “Autistic adults” were not uttered. Ever. We heard about how imperative it was to immediately implement early intervention, we were shuttled off to get an “independent diagnosis,” we were advised to start investigating ABA therapy, we were inundated with ABA therapists, speech therapists, occupational therapists, a social worker came to our home once a week, team meetings were held regularly, we were trained to continue Emma’s ABA therapy after the last therapist had gone home. We were advised to put Em on a gluten free/casein free diet, we were encouraged to read the thousands and thousands of pages of material thrust at us from a wide variety of well-meaning and well intended people.

In that first year of Em’s diagnosis, I was well versed in various theories regarding gut issues, lead levels, mercury levels, toxicity in our food and water, and I could reel off at least six different unpronounceable ingredients in vaccines. I’d read at least 30 memoirs written by parents of Autistic children as well as books with titles such as A Parent’s Guide to Autism: Answers to the Most Common Questions, The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders, Handbook of autism and Pervasive Developmental Disorders and Biological Treatments for Autism and PDD. I’d taken Em to cranial sacral therapists, homeopaths, lead specialists, developmental pediatricians, nutritionists, allergists and a DAN (Defeat Autism Now) doctor. I knew about ABA, VB, RDI, PECS and DIR therapies. I read and reread Catherine Maurice’s Let Me Hear Your Voice with the same dogged, determination and devotion evangelicals read the bible. I knew about sorghum flour, rice flour, garbanzo bean and fava bean flour. I honed my cooking skills on perfecting a gluten-free/casein free birthday cake for Em’s third birthday with platters of tasty GFCF finger foods, which Emma refused to touch, let alone sample.

Autism, seemingly overnight, had become my focus. I was set on fighting it. I was engaged in nothing less than a war. My weapons were my determination, my tenacity, my stubbornness and my love and devotion for my daughter. Everything else came to a screeching halt. Everything else fell into line behind my research. I was on a quest. To my way of thinking, I was on a mission to save my daughter’s life.

When my husband, understandably alarmed by the fervency with which I threw myself into my research, suggested I was spending too much time searching, I was furious. I railed at him, enumerating all the things I was doing with the sole intent of saving our daughter. I was furious that he seemed unable to fully understand the battle I was waging. It never occurred to me there was another way. It never dawned on me I was battling windmills.

That Autism was the enemy, something to be vanquished, defeated and destroyed, I did not question. I didn’t have time to question, I was too busy dealing with the Board of Education, therapists, Doctor’s appointments, tracking down every “cure,” and baking foods my daughter wanted nothing to do with. Every time I turned around someone was sending me a link to a new “cure” a new treatment, a new therapy, a new “miracle worker.” Countless people would begin a conversation or email with, “Have you tried…” “Have you heard of…” and I would grab a pen and begin taking notes. Doggedly I pursued each and every tip. Determined not to leave a single stone left unturned, my days and nights were filled. I was busy. There was no time for calm contemplation, there was no time to sit and consider the path I suddenly found myself.

The Seven Year War.

And then… what happened? What changed? Everything. I began to question the “truth” about autism. I began to question the dogma. I began to question the “facts.” It was inevitable, I suppose when you read as much as I do. But the single biggest change occurred because I found Autistic Adults like E. I’ve written about this before, ‘here‘ (the post where E. first reached out to me in the comments section) and again ‘here.’ I won’t go on about that process, except to say this – there is something about the immediacy and the interactive quality of a blog that no book can replicate. In addition, a blog written by someone who is Autistic is far more interesting to me than anything I’ve heard from researchers, specialists, therapists, teachers, doctors because Autistics are talking about their lives, it’s not a theory, there’s no speculation.

Want to know about Autism? Ask Autistics.

Thank you E. for reaching out to me. Thank you for generously holding out your hand to me in kindness and friendship. Should all parents be so fortunate as I have been.

A quick aside, E. was also one of the creators of the Autism Positivity Flash Blog (see badge on right side of this blog) where a group of bloggers reached out to hundreds of us asking that we write a post in answer to the google search words “I wish I didn’t have Aspergers.” If you haven’t gone to that blog, do. It’s a veritable who’s who in Autism blogging by Autistics and parents coming together to support someone on the spectrum.

What lengths would you go to if your child were diagnosed with autism?

This blog is about what we have learned, what we have done and continue to try in the hope that we may help our daughter Emma, now 8 years old, lead a life that includes deep friendships and the powerful bonds that result from being able to communicate with one another. A life that is enriched by our interactions.. this is what I dream of for her and what drives us to go to such extremes to help her, hopefully, achieve some day.

Five and a half years ago we received the news that she had been diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified). Since then it has been nothing less than a wild roller coaster ride of hope, disillusionment, gratitude, determination and perseverance.

Here are some of the therapies we have tried in the last five plus years:

Gluten/Casein free diet – no noticeable change after five months

Homeopathy – up to 13 tinctures a day delivered orally – suppose to help her gut issues – no noticeable change after more than 10 months.

Cranial Sacro Therapy – did seem to help her constipation issues at first, but over a longer period (close to a year) did not appear to help enough to warrant continuing.

Qigong Master – suppose to help regulate her “energy flow” and promised to “cure” her autism – no discernible change after almost 6 months.

Chelation – we did one round before discontinuing upon advisement from a number of lead and metal specialists out of Albert Einstein College of Medicine.

Detox Foot pads – Pads that supposedly draw toxins from the body while she slept. No noticeable change after several months.

Brushing Therapy – Emma became very hyper as a result of brushing therapy and after her sleep became disrupted we discontinued.

Auditory Integration Therapy – while this therapy did not seem to adversely effect her, it did not appear to help either. We discontinued after a few years when she began objecting to it.

Hyperbaric Chamber – We did not do more than 10 sessions. So I cannot comment on whether this may have helped or not. We discontinued because we were starting the stem cell therapy and wanted to do one over the other.

ABA (Applied Behavioral Analysis) – 40 hours per week – we discontinued after two years when Emma began regressing.

Stanley Greenspan’s Floortime Therapy – We continue to use Stanley’s DIR methods. Emma has made noticeable improvements in language – both receptive and expressive – as well as shows a real interest in initiating play with others, both adults and peers, as well as a huge uptick in imaginary play as a result.

Stem Cell Therapy – The Institute for Cellular Medicine – Costa Rica

We took our daughter Emma for her first bout of stem cell treatments with the hope that they might help her autism in March, 2010. The Institute for Cellular Medicine was introduced to us by Emma’s neuroscientist in New York City. This treatment is in it’s infancy, they have only treated about 100 autistic children, but are seeing promising results. The stem cells were harvested from umbilical cord blood and mixed with her own blood serum.. They then injected this mixture intrathecally and intravenously on Tuesday and again on Thursday. She was sedated for all procedures. Emma had a bad reaction to the first round, evidently fluid leaked from her spinal cord causing blinding headaches and vomiting. We were able to calm her with pain medication and by Wednesday evening she felt much, much better. We decided to go ahead with Thursdays treatment and had them sedate her after the procedure to ensure that she lie flat and thus lessen the likelihood of seepage from her spine. She was also given a drug to reduce nausea. She rested in the hospital with us by her side for almost four hours. We have been told that we should not expect to see any significant change for a month or two. We will be returning to Costa Rica for round two in August.